The Lived Experience of Patients and Family Caregivers in Managing Pneumoconiosis

Background: The daily challenges of patients with pneumoconiosis and their caregivers in living with and providing care for this disease remain unexplored. Methods and findings: As guided by the interpretive description, we found that pneumoconiosis patients suffered from highly anxiety-provoking symptoms and physical debilitation, which evoked high levels of distress and sense of impending death. The reduced functional capacity disrupted patients' role functioning and self-esteem. The perceived stigma of the embarrassing symptoms and treatments further disrupted their self-concept and social lives. Providing care for pneumoconiosis patients was demanding and burdensome, which jeopardized family caregivers' physical, emotional, and social well-being, and the relationship strain with the patients added further frustration to them. The perceived caregiving gain supported them to fully engage in daily caregiving. Conclusions: To improve the well-being of pneumoconiosis patients, a comprehensive empowerment-based dyadic care model is required to optimize adaptive behavioral changes and self-esteem, and improve self-efficacy in disease management for this cohort.